Spotting Cystic Fibrosis: Test Welcomed, But Payment Raises Concerns

Nearly 100 Texas children annually could live healthier lives thanks to screening of newborn babies for cystic fibrosis the Texas Department of State Health Services (DSHS) planned to begin in December. The addition of cystic fibrosis brings to 28 the number of genetic disorders being screened in Texas.

Texas physicians applaud adding the disease to the screening panel but are concerned that the increased cost could prompt some physicians to stop collecting the blood samples necessary for the screens.

The problem?

Physicians say health plans often reimburse only a fraction of the current $29.50 fee physicians must pay for the newborn screening test kits, which include blood spot cards. Adding cystic fibrosis to the screening panel means the fee likely will rise between $5 and $10.

"That creates for most of us in private practice just a really untenable situation," said Longview pediatrician Skip Brown, MD, chair of the Texas Medical Association Council on Socioeconomics.

Dr. Brown says there is a "real danger" that some children may not be adequately screened for genetic disorders as a result.

A Full Panel

The Texas Legislature authorized DSHS to begin screening for cystic fibrosis in 2005 when it granted the agency the authority to test for all 28 genetic disorders on a core panel recommended by the American College of Medical Genetics.

DSHS began screening for 27 of the 28 disorders in December 2006 but left off cystic fibrosis because the $3.1 million in start-up funding from the legislature didn't cover the cost of screening all 28 conditions, says Susan M. Tanksley, PhD, manager of the DSHS Biochemistry and Genetics Branch.

"The law states 'as funding allows,' and funding for cystic fibrosis was not part of those original appropriations," Dr. Tanksley said.

DSHS estimates it will identify between 80 and 90 babies each year born with cystic fibrosis. While that represents a small percentage of the roughly 400,000 births annually in Texas, it would rank as one of the most frequent conditions that the newborn screening program spots, Dr. Tanksley says.

In 2007, about 600 infants were diagnosed with one of the 27 conditions then screened by the program.

Dr. Tanksley says early detection of cystic fibrosis through screening is important because children born with the condition may initially have normal lung function. "The longer it takes to diagnose it, the more damage there is to their lungs," she said.

According to DSHS, early detection and treatment can lead to improved growth and development, increased life expectancy, and reduced medication, hospitalization, and mortality.

Who Pays?

While screening can save lives of children suffering from cystic fibrosis and other genetic disorders, physicians are concerned some kids could fall through the cracks because commercial health plans do not cover the full cost of the screens.

Each child is screened twice for possible genetic disorders. DSHS does the first screen on blood samples collected at the hospital within 48 hours of birth. The second screen is done with blood samples usually collected by the child's pediatrician or primary care physician about two weeks later. The expanded DSHS program will add cystic fibrosis to the screenings.

However, leaders of TMA and the Texas Pediatric Society (TPS) say some physicians balk at doing the screens because they have to pay the $29.50 up front for the blood spot cards and get back only a fraction of that amount from the child's health plan.

TMA officials say some plans pay as little as $3 for newborn screening, even though the state's six largest health plans - including Aetna, Blue Cross and Blue Shield of Texas, CIGNA, Humana, UniCare, and UnitedHealthcare - promised TMA they would cover the full cost when DSHS raised the fee from $19.50 to $29.50 after it expanded the program in 2006. Some health plans pay the full $29.50.

"Pretty much across the board if you were to submit charges for payment under third-party payer plans, you're going to lose money every time for doing this service," said Keller pediatrician Jason Terk, MD. "The [expected] cost increase will make it even more of a money-losing situation."

Dr. Tanksley said in November that DSHS had not determined the fee for the expanded screening program, but information on the DSHS Web site indicates it will increase somewhere between $5 and $10. The new fee is expected to take effect this month.

Dr. Terk says his practice no longer submits claims to health plans for the newborn screens because payment usually ranges between 50 percent and 75 percent of his cost. Instead, his office lets parents know up front that if they want the screen done there, they will have to pay for it themselves.

He says the expected fee increase likely will prompt some physicians to avoid the administrative and payment hassles and send newborns back to the hospital for the second screen.

But Dr. Brown says that may not work, either. The larger of the two hospitals in Longview now refuses to do the second screen because it does not get full reimbursement for the cost of the screen, he says.

He says some health plan payments are so low "it's not even in the same galaxy" as physicians' cost for the screening cards.

Carrie Kroll, director of advocacy and health policy for TPS, says the health plans contend the global fee they pay for the first newborn visit covers the screening cost. She says those global newborn visit fees are inadequate to cover both the screen and the other services provided in those visits.

But at least two of the plans - Blue Cross and UniCare - say they cover the entire $29.50 test kit fee. In addition, Blue Cross spokesperson Margaret Jarvis says her company does not bundle payment for the screenings in a global newborn visit fee.

"We cover the cost of that kit, and the way doctors bill us is that they bill for the cost of the kit and then they bill separately for the office visit and, of course, any other procedures or tests they may need to do that day," Ms. Jarvis said.

Texas Department of Insurance spokesperson John Greeley says state law does not require health insurers to cover newborn screening.

Dr. Tanksley says DSHS is aware of physicians' concerns about health plan payments and is working with TMA and TPS to address the issue.

Emily Babcock, policy analyst in TMA's Division of Public Health and Medical Education, says DSHS has discussed convening a meeting involving physician groups, health plans, and others to focus on expected fee increase and payment issues. Details of that meeting, however, were not final as of mid-November.

"If the children aren't being screened and a kid is missed because of that, then obviously that presents a problem," Dr. Tanksley said. "We're very concerned about any cases that are missed, especially if they're not being appropriately screened."

Genevieve Davis, director of TMA's Payment Advocacy Department, says physicians may need to confirm that they are billing the correct code for the screenings. She says the Healthcare Common Procedure Coding System code for the newborn screening is S3620. This code includes the test kit, postage, and laboratory tests.

Mass Destruction

Meanwhile, another new wrinkle in the Texas Newborn Screening Program appears to be causing some confusion for physicians, hospitals, and parents.

Earlier this year, DSHS implemented a new law that allows parents to direct the department to destroy blood spot samples collected for the newborn screenings.

Previously, all blood spot cards were stored for future use, either for quality assurance purposes at the DSHS Newborn Screening Laboratory or for research. However, a lawsuit filed in March by the Texas Civil Rights Project on behalf of five parents who objected to retention of their child's blood samples prompted lawmakers to authorize the opt-out policy.

Dr. Tanksley says the law requires hospitals and physicians who collect the newborn screening samples to tell parents they can request destruction of the blood spots. The disclosure document includes a form parents can fill out and sign if they want the blood spots destroyed.

Dr. Tanksley says DSHS receives about 650 requests for destruction of the blood spots each week, but it also gets a large number of forms that are not filled out completely or that indicate the parents do not wish their child's blood spots to be destroyed.

She says parents do not have to return the form to DSHS if they agree to have the child's blood sample retained. Instead, DSHS has added a label to the newborn screening card that includes a verification check box where the physician or hospital can indicate that the disclosure has been provided. That check box will be incorporated into the card itself when the next batch of cards is printed, Dr. Tanksley says.

More information on the storage and use of dried blood spots, as well as the directive to destroy, is available on the DSHS Web site .

Ken Ortolon can be reached by telephone at (800) 880-1300, ext. 1392, or (512) 370-1392; by fax at (512) 370-1629; or by e-mail at Ken Ortolon .

RELATED STORY

State Aid Available for Newborns With Genetic Disorders

Parents of newborns identified with one of 28 genetic disorders can get state assistance for treatment and testing of those disorders under a little-known program run by the Texas Department of State Health Services (DSHS).

The Newborn Screening Benefits Program covers infants, children, and adults who do not qualify for Medicaid or the Children's Health Insurance Program (CHIP) but cannot afford private health coverage. Coverage is prioritized by need as funds are available.

"It's coverage of the last resort," said David Martinez, manager of the DSHS Newborn Screening Unit.

The program covers anyone diagnosed with a disorder identified by the newborn screening program whose income is below 350 percent of the federal poverty level. A person must be a bona fide resident of Texas to be eligible for the program.

Persons covered by Medicaid, CHIP, Children With Special Health Care Needs, Title V Genetics Services, or private health insurance are ineligible.

The program covers the cost of dietary supplements, medications, vitamins, confirmatory testing, and telephone consults by specialists.

Sharon Newcomb-Kase, ombudsman in the Newborn Screening Branch of the DSHS Family and Community Health Services Division, says depending on available funding, program benefits are provided to the following populations, who meet all the eligibility criteria listed in this section, in the following order:

Children aged from birth to 2 years,

Children aged 3-5 years,

Children aged 6-21 years,

Pregnant women,

Women of childbearing age, and

Adults (female or male).

Physicians can find more information about how to help their patients enroll in the program on the DSHS Web site .

Ms. Newcomb-Kase says the department is updating its Newborn Screening Benefits Provider Manual . The new manual will have information on cystic fibrosis providers and medications, vitamins, and dietary supplements that will be covered for those identified with cystic fibrosis. Cystic fibrosis was to be added to the Texas Newborn Screening Program in December.

Mr. Martinez says lawmakers gave DSHS an additional $52,000 in funding for the benefits program to cover the cost of cystic fibrosis treatment and testing for those who qualify.

Ms. Newcomb-Kase says her office also is available to assist families, the public, health care providers, community organizations, and government agencies in resolving issues regarding obtaining benefits and service-related issues for the Newborn Screening Benefits Program.